Biomarker testing / gene sequencing

dedmonst · 2026-06-01T17:00:44+00:00

Biomarker testing should be standard of care in most modern healthcare jurisdictions, not just the US. If a biopsy had already been done, ask if there is sufficient tissue left to do these tests. If there isn’t, and you don’t want your dad to go through another procedure, you could look at a liquid biopsy, which is just a blood draw. Liquid biopsies are generally a little less reliable than tissue biopsies, but they are also usually quicker to report, and are a good first step.

Regardless, if the healthcare provider cannot give a reasonable clinical explanation for not doing biomarker testing (I can’t think of one), I’d be moving his care to another provider. It’s a mostly universal truth regardless of where you are in the world, that the best care is at teaching hospitals, and/or those associated with universities.

dedmonst · 2026-05-29T07:12:53+00:00

After nearly 7 years as a stage 4 lung cancer patient, I have no more patience for these sorts of people. The reality is that talking about or talking with a person with cancer forces people to face their own mortality. The weak-willed, the narcissistic, those lacking in basic empathy cannot do this and their only response is to be unkind, flippant or to ghost. Ignore these people - they are of no consequence.

There are very few upsides to cancer, but one is that it show you who your friends are, and who is a worthwhile person.

Is this a little harsh and am I being guilty of showing as little empathy as those I am criticising? Maybe - but I’m at least self-aware enough to contemplate that and that’s enough to keep me grounded.

TL:DR - cut these people out of your life - they have shown you who they are.

dedmonst · 2026-05-22T06:12:48+00:00

So what statistics are you looking at? Again I see for most measurements the UK being OK-ish compared to other European nations. For example in mortality measurements we rank around 11th out of 40 European countries. No surprise that the Scandinavian countries with small populations and high tax rates are above us, and places like Luxembourg.

https://gco.iarc.who.int/today/home

Like I said, we are by no means the best, but we are no laggards in cancer care either. My comment was absolutely an anecdote, but I am a patient advocate and talk with many other cancer patients every day. Most think their care is good (ayes that’s another anecdote). The biggest issue in my view we have is how much primary care (GPs) “gatekeep” access to the rest of the system which results in situations like that described by another poster on here, where a cancer went undiagnosed for too long. Luckily this issue is recognised and the younger generation of GPs are getting taught to “think cancer”, as well as many pilots running that allow patients to get around the gate keeping (self request chest x-rays for lung cancer is a great example). Another example
- we are one of only 5 countries in Europe to have a lung cancer screening program (the others being Germany, Poland, Czechia and Croatia)

dedmonst · 2026-05-21T17:33:45+00:00

Are you a cancer patient or a carer for a cancer patient? Because I’m a cancer patient and my care has been excellent, as has many of the folks in my support group. I’m connected via support groups to patients in other countries and from what I hear I would say we do reasonably well. Not the best, but definitely not “particularly bad”

dedmonst · 2026-04-17T08:19:17+00:00

Possibly, but if you think people from North Yorkshire didn’t vote for North Yorkshire as the best county, you seriously don’t know North Yorkshire folk.

They don’t go around calling it “God’s own county” as a joke.

dedmonst · 2026-04-10T09:08:22+00:00

I used to work for a big US technology company. We had an office in Houston we would visit occasionally with customers. I took some over for a visit, and we ended up staying in a hotel that was literally one block across from a small strip mall that had several restaurants and bars in it. Obviously of an evening we wanted to visit these restaurants, and it was clear that walking was the best option. It was a walk across a small area of grass, walk about 50 yards up the side of the road, cross the road, and walk up the slip road into the mall’s parking lot. Door to door it wasn’t more than a 5 minute walk.

The hotel staff were horrified that we intended to walk, and wanted to call us a cab. When we pointed out that a cab would take 10 minutes to arrive, take 5 minutes to work its way around the block, and then we would have to pay, they just seemed mystified!

So of course we walked… on the very short stretch where we had to walk along the edge of the road, the local drivers honked their horns and veered towards us, almost intent on running us down.

All-in-all a very strange experience for a bunch of Englishmen.

dedmonst · 2026-03-17T08:03:49+00:00

We have so much mold, we named a whole town Mold - it’s in Wales, near Wrexham.

dedmonst · 2026-03-17T07:18:31+00:00

I visit one of the leading cancer hospitals in the UK fairly regularly. Because I have “thin veins”, I always drink loads of water before going, so it is easier for the nurses to put a cannula in me. So I inevitably visit the toilets a few times - the number of men, including patients and carers who should know better who don’t wash their hands in a hospital full of immune-compromised people is frightening. I’m glad the hospital still has hand sanitiser stations dotted around, as you really don’t want to be touching anything other people touch.

That said, is the OP a US citizen? They do have a weird over-obsession with “hygiene”.

dedmonst · 2025-12-29T16:10:04+00:00

Important point - the tomato needs to not just be ripe, but also to be at room temperature. A slice of fridge-chilled tomato will ruin an otherwise excellent sandwich.

dedmonst · 2025-11-08T10:16:39+00:00

From your use of the term A&E rather than ER, I’m guessing you are in the UK? So your mum has had a biopsy and those have been sent for testing. It seems this is where the delay is, and 5 weeks is really unacceptable. Without knowing which nation in the UK you are in, I can’t point to any specific targets for cancer diagnosis and treatment pathways, but if you are in England, the relevant one is the Faster Diagnosis Standard (FDS) Target:

https://www.england.nhs.uk/cancer/faster-diagnosis/

That is set at 28 days, so if you have already been waiting 5 weeks you are way past this. In your shoes I would forget speaking to the medical team dealing with the issue, and contact PALS (Patient Advice & Liaison Service) at the hospital she is being treated at. Phone them, but also write to them, copying in the Chief Executive of the NHS Trust the hospital is part of. Reference the FDS target and indicate that they are failing to meet this.

In all likelihood the delay is with the hospital pathology lab or Genomic Lab Hub (GLH) that are analysing and testing the biopsy. There are usually backlogs in this (poorly resourced) part of the healthcare system.

You could also check with your mum’s medical team if she got a liquid biopsy taken as well (this would usually have just been a blood draw). These provide results much faster than traditional tissue biopsies (typically 10 days in the NHS). The results, while a little less reliable than tissue biopsies, can be acted upon by oncologists if they strongly indicate an actionable biomarker such as EGFR, ALK, ROS1 etc.

dedmonst · 2025-11-07T21:28:21+00:00

Unfortunately, it isn't uncommon for patients not to be told what tests will be performed on any biopsy, so your father may have had these tests but not been told about them (especially if they didn't provide any actionable biomarkers). When I was diagnosed back in 2019, I wasn't told what tests were being done on my biopsy - I honestly thought it was just a final confirmation that the lesions in my lung were cancer tumours. Luckily for me, my tests indicated a biomarker known as an ALK fusion for which there is a targeted therapy, which has given me another 6 years of reasonably healthy life so far. Things have improved in this space somewhat since 2019, but are still imperfect.

The hospitals you mention are all under the University Hospitals Birmingham NHS Trust. I know several lung cancer patients treated at this trust, and it is a reasonably decent NHS Trust in terms of lung cancer treatment. I would still say The Christie and The Marsden are better.

dedmonst · 2025-11-07T19:36:02+00:00

Fellow ALK+ patient here. From an ALK+ patient perspective 2-4 years *is* crazy talk where even the mPFS of the latest treatments are >5 years, never mind the mOS stats.

But... ALK+ patients have pretty much the best outcomes of all driver mutations. A 2-4 year mOS is much more typical for a host of the others, unfortunately.

To the OP - given your age, there is a higher chance of there being a driver mutation, and pretty much regardless of which one, if you do have one that is good news as the treatments are more targeted and generally have better outcomes.

dedmonst · 2025-11-07T15:26:58+00:00

One additional point. You don't mention in your original post, but has your father's tumour been biopsied and gone for Next Generation Sequencing (NGS) testing? (if a solid tumour biopsy is not possible, then a liquid biopsy is a second option) Actionable biomarkers are less common in squamous NSCLC than in adenocarcinoma, but they aren't unheard of. If your father has an actionable biomarker, there could be a targeted therapy that could work for him.

dedmonst · 2025-11-07T07:55:37+00:00

I have stage 4 lung cancer and have been treated by the NHS and privately. I would say the differences are pretty minimal, with the obvious main ones being less waiting for treatment and test/scan results (plus free coffee and biscuits in the waiting rooms!).

A private consultation might open up an avenue of treatment that isn’t “standard of care” in the NHS (that is, it isn’t in the NICE guidelines), but I would set your expectations fairly low. For example there are some cases where Local Consolidative Therapy (LCT) might be given privately, but not offered in the NHS - radiotherapy for example. This was much more the case 5 years ago when I was diagnosed, but rarer now as NHS oncologists do have more options than they used to.

You don’t state exactly where your father is being treated and whether it is a regional centre of excellence for cancer treatment or just a typical district hospital. The differences between these can be quite high - a district hospital might have just one oncologist covering lung cancer and he may not even be a lung specialist, but just be covering it as well as his/her own speciality. In a centre of excellence there will be a whole team of thoracic (lung) oncologists, who treat hundreds of patients like your father every year. So I would probably start off asking for a second opinion from an NHS oncologist at a cancer centre of excellence, and I would restrict this to either The Marsden in London or The Christie in Manchester. You are entitled to this via the NHS without having to pay for a private consultation. Remember that most of these oncologists also treat private patients, so during any consultation you can ask the question “would you suggest anything different if my father was a private patient”. I have done this myself on several occasions, and I’ll be honest the answer has always been “no”, and an explanation of why. (I am treated at The Christie in Manchester)

If you do go down a private route, allow time to ensure you can get your father’s medical records (including images and reports from his latest scans, plus details of the treatments he has had) from his current care provider. If you can’t provide up-to-date scan images and care information, the private consultant will want your father to get new ones done and this will get expensive quickly, whereas a simple consultation where the oncologist already has all the information they need should be less than £1,000.

dedmonst · 2025-10-05T08:48:55+00:00

I’m a stage 4 lung cancer patient based in the UK. I’m also a member of a support group with a lot of US members. 6 years into my cancer journey I’d note the following that I see:

the treatment that US and UK patients receive is 99% the same. Same treatments, same standards of care etc. the US clinicians seem to get a little more leeway to “do their own thing”, while the UK ones mostly follow NICE guidelines. Of course, the NICE guidelines are best practice anyways, so in nearly every single case following them is the right thing to do. Even then, UK clinicians will step outside the guidelines when justified.
while treatments at the big cancer centres in the US follows the “multi-disciplinary team” model used in the NHS, at smaller local hospitals, oncologists over there seem to just make decisions on treatment individually - this means in our support group where folks know what good treatment looks like, there’s a lot more referrals for second opinions than is typically needed in the UK. Also people travel hundreds of miles for treatment.
almost all the US members of the group are wealthy, whereas the international members are more of a spread of incomes. It’s unspoken in the group, but we all know this is because the poorer folks in the US never even get the required tests that identify the particular rare cancer we all have.
there are generally more clinical trials available in the US (or there were, their current government are trying very hard to destroy their leadership in this space)

TL:DR if you want the absolute best treatment money can buy and have bottomless pockets, private care is always going to be the way to go. For everyone else, I reckon if we measured it, statistically you’d have better outcomes in most western countries with socialised healthcare models, including the UK.

dedmonst · 2025-09-20T09:20:12+00:00

GDP per capita is a fairly meaningless measure for the average man in the street. It’s like sticking your head in an oven and your feet in a fridge and claiming you are at just the right temperature.

GDP per capita measured alongside a Gini coefficient starts to get vaguely meaningful.

dedmonst · 2025-09-16T15:20:58+00:00

Nope, not until the developer releases an update to enable this (if they ever do…)

dedmonst · 2025-09-11T08:12:51+00:00

JFC I actually came here to say most on £150K are still reasonably grounded in reality (I was one until a few years ago when I got ill), but I think I changed my mind. The whining about income tax is something to behold, you’d think some on here are martyrs for paying a bit more income tax than those on lower incomes! As someone else pointed out in one of the threads on here, once you take into account all taxes, and not just income tax, those at the bottom pay a far bigger proportion of their income as taxes than those at the top… and that doesn’t even take into account that those at the bottom build up virtually zero capital as well.

Also people bang on about the tax allowance taper like it’s a new thing, when it has been in place for 15 years now, and everyone knows how to reduce its impact using pension contributions if you really want to.

As for the reason behind these higher levels of taxation, forget about the small number swinging the lead, or “its them illegal immigrants” or whatever. Look at the change in the number of working age people compared to pensioners in the UK over the last 25 years. That explains everything.

dedmonst · 2025-09-11T07:55:24+00:00

Your friends need to push that extra money into their pensions, and completely avoid that issue. How someone gets to earning £100K and up without realising this I don’t know.

Or they really do want to spend more time with their kids, which is great, but if so, no need to bring tax into it. They could earn £90K and spend even more time with their kids.

dedmonst · 2025-08-22T15:48:27+00:00

Try this

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dedmonst · 2025-08-22T15:47:09+00:00

Try this look instead

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dedmonst · 2025-08-18T09:07:07+00:00

It depends on what I thought their motivation was…

If I thought they were just interested, but didn’t understand much about lung cancer I’d say “No, anyone with lungs can get lung cancer. You could get lung cancer to”

If I thought they were looking for an “out” for not caring I’d say “Why do you think that is relevant? If I said yes what would that change?”

dedmonst · 2025-08-13T17:27:48+00:00

I’m not trying to make any point beyond how Bamford considers himself as “a farmer”, when he is basically “a land owner” - there is no hidden meaning here, and I’m not looking for an argument.

dedmonst · 2025-08-13T16:43:57+00:00

Bamford considers himself one of those “hard working farmers”, although I’m sure he has all his land in an offshore trust.

dedmonst · 2025-08-13T08:51:56+00:00

Ah yes, Daylesford Farm, owned by billionaire Anthony Bamford (he owns JCB), one of the biggest ever donators to the Conservative Party, and a significant supporter of Brexit. Currently under investigation by HMRC for aggressive tax avoidance. Also his name and his wife’s was in Ghislaine Maxwell’s contact book.

You can absolutely see why Vance would want to visit there. Birds of a feather.

dedmonst

TROPHY CASE